Hi cjleeds,
You mentioned that you have lost over a stone in weight.
I don’t know if this will provide any assurance, but in terms of weight:
– From the date of diagnosis, I lost about 15kg = 33 pounds in weight. (I had also lost weight before diagnosis, but wasn’t tracking it).
– Starting a month or two into remission, I started having what I call ‘hunger attacks’. I frequently have two breakfasts or lunches, as my body sometimes just demands that I have high calorie food. So far I have put on about 5kg = 11 pounds.
– High calorie milkshakes can be prescribed. They come in powdered form, in sachets: just add milk.
Regards
Rabbit
PS To anyone unfamiliar with the abbreviations:
SCT = stem call transplant
D = Daratumumab = Darzalex
R = Lenalidomide = Revlimid
d = dexamethasone
Hi Squirrel,
In March 2023, I had a routine eye test. The optician found that I had early signs of cataracts. Routine for someone like me, in my 50s, so it didn’t seem anything to do with MM (my treatment started January 2023). Therefore it was just something to monitor for the long term.
By October 2023, my vision had become noticeably blurred in both eyes. It seemed to have come on suddenly*. I frankly panicked: it was bad enough having high risk MM without one of my senses getting dramatically worse. I was seriously worried about going blind. My consultant referred me to a private opthalmologist specialising in cancer cases (cost £300 for the consultation). She diagnosed that the dexamethasone had made the cataracts far worse.
*The opthalmologist explained that my brain had been compensating for the deteriorating vision until it all became too much for my brain.
Now that I knew that the medical situation was relatively routine, even though the cause was not, I calmed down and had cataract operations. There was the complication that I needed infusions of platelets just before the ops, but it was all straightforward other than that. In the process, my shortsightedness has been corrected: I no longer wear specs!
Regards
Rabbit
Hi gc,
Specifically on Zometa, when I finally started getting it (they forgot until I reminded them!), I had the following side effects a couple of days after each dose (every 4 weeks):
– I had such a loss of energy that I could barely walk (thankfully that reduced after the first couple of doses).
– I have symptoms resembling the worst kind of flu.
I don’t have bone lesions: my many years of lifting weights has given me strong bones, despite being hypercalcaemic when I was diagnosed. I asked/begged my consultant to stop the Zometa (this was before I was fully aware of the importance of preventing lesions in future).
We came to a compromise, as my consultant said that there was ‘wriggle room’ on treatment frequency: I now get Zometa only every 12 weeks. I still get the side effects, but at least they are no more frequent than necessary.
Regards
Rabbit
Hi Twinz,
I have been in remission for 10 months now.
I think that there are 3 parts to this:
– Level of immunity
You have probably got up to speed on the relevant jargon: platelets, neutrophils etc. My understanding, as someone with MM, is that the level of neutrophils is the most important in terms of the risk of bacterial infection: this seems to be the bigger danger compared to viral infection. However, I am by no means saying that viral infection is not important. Therefore: how many neutrophils do you have? (other parts of the immune system also being relevant).
I have blood tests every 4 weeks and I am warned to be more cautious when my neutrophils are especially low.
– Quick wins
You mention avoiding busy places and wearing a mask. Then there is also:
– eating a neutropenic diet (e.g. no raw meat or fish)
– washing hands frequently
– avoiding people known to have infections.
– keeping up to date with vaccinations
None of these are particularly difficult to do, and can significantly reduce risk.
– Attitude to risk
An analogy: when it comes to savings and investments, some people are very cautious and put every penny in the bank. Some take more risk, by taking punts on the stock markets of (say) Vietnam and Georgia, knowing that this is more risky (i.e. you could lose money) but it could bring more reward. There is no right or wrong in this, but some people take more risks then others.
Likewise, once unnecessary risks have been removed (the ‘quick wins’ such as those above), it depends on your own attitude. It is perfectly reasonable to be cautious and lead a low risk lifestyle: I get the impression that that is what you are doing. My lifestyle is more risky: since going into remission, I have had a number of holidays, saw my youngest graduate from university, went to a pantomime in London’s West End…
Have I had infections? Yes! I came back from one holiday with gastroenteritis and from another with a cough that took weeks to clear up. I don’t regret it, though. There will come a time when I fall out of remission, and after that there could be tough times ahead in terms of chemo side effects, bone pain etc. One thing that is going to help me cope is having fond memories of the sightseeing, local cultures, and spending time with family while doing all this. My life, my choice. It also means that they have fond memories of me enjoying the local cuisine, “Dad dancing” in public (I am unembarrassable :-)), heart to heart conversations etc.
Therefore, when you ask “will it [the fear of infections] eventually improve”, I suggest that it is up to you.
If you want to deal with this fear – and I did go this stage during the first few months of chemo – I suggest going a bit outside your comfort zone, getting used to that, then a bit further etc. Happy to discuss further.
Regards
Rabbit
Hi Anne,
When the UK was in the EU, regulatory approval was done by the European Medicines Agency (EMA): ironically, it was based in the UK.
Post Brexit, the UK set up its own regulator, the Medicines and Healthcare products Regulatory Agency (MHRA).
This paper indicates that the MHRA fell behind the EMA in approvals in 2021:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9797847/
Note that Abecma, one of the drugs mentioned, is a CAR-T treatment for myeloma.
Medical charities, including Myeloma UK, did ask the UK government to use the EMA for UK regulatory approval before Brexit actually happened. Didn’t happen.
Regards
Rabbit
Hi Anne,
The situation is better than that.
CAR-T and bispecific antibody treatments have already been approved in the US and the EU.
Going off topic, I could curse Brexit. The UK regulator is taking its time to approve new MM treatments.
My reading of things is that CELMoDs are further off, with dendritic vaccines way off on the horizon. I would, of course, welcome being corrected on any of this.
Regards
Rabbit
Hi Anne1,
I know that hearing things like this can be depressing.
Here are a few thoughts:
1. “Average”
2 years sounds like the median time in remission. That means that it is less than that for 50% of patients, and more for the other 50%.
In the second group there are patients who stay in remission for far more than 10 years.
The word average in day to day life is the total of all the remission times of a group divided by the number in the group (this is otherwise known as the mean). That is more than the median.
MM researchers use medians in measuring how effective a treatment is so that they can assess things when it has stopped working for half the patients. If they used the mean, they would have to wait much longer, for it to fail for the very last patient. That would delay the roll out of a new treatment: bad for patients, bad for pharmaceutical firms.
2. Further treatments
When one falls out of remission, there are many other treatments out there. Sometimes these are more effective for the patient than the first “line” (the initial chemo followed by the SCT).
3. Future treatments
MM treatments have improved enormously in recent years, and there are more entire types of treatments on their way: CAR T, bispecific antibodies, dendritic vaccines, CELMODS…
Even if someone only stays in remission for a couple of years after the SCT, that and the other treatments already approved can buy time for these new treatments to be rolled out in the UK (CAR T and bispecific antibody treatments have already been approved in some other countries).
Regards
Rabbit
Hi Nick,
Side Effects
The side effects of the chemo vary enormously from one person to another. Therefore it is difficult/impossible to say how it will be for you.
Having said that, I will mention a few common side effects and related tips.
1. Fatigue and sleeplessness.
Dexamethasone can have many “interesting” side effects, but one of the biggest is that it can mess up sleeping patterns. I only read recently that “Dexy’s Midnight Runners” got their name from taking dexamethasone to party at midnight!
At the same time, fatigue is normal. If you need a daytime nap, go right ahead.
2. Weight
The chemo can cause loss of appetite and nausea. Somewhere on this forum, one or two people mention that rice pudding, custard and yoghurt go down well. I independently discovered that too.
Dexamethasone can also increase appetite (in the short term).
Don’t worry about your weight (unless you are losing a lot – you can be prescribed high calorie drinks).
Now that I am in remission, I often have ‘hunger attacks’ my body just decides that it needs an extra meal to put weight back on).
Take Control
It’s great that you have been reading up. Apart from anything else, doctors are not gods.
A couple of personal examples:
MM leaches calcium out of the bones, which can cause fractures. To prevent that, treatment normally includes a bone strengthening drug such as Zometa. My consultant simply forgot to start giving me Zometa – I had to remind him!
I felt that my eyesight was deteriorating. My consultant either didn’t believe me or thought that was nothing to do with MM. I saw an opthalmologist: the chemo had damaged my eyesight (to be fair, this is unusual). I have had surgery and now my eyesight is the best that it has ever been!
Family and friends
If you have them and they live close by, this is a time when help from loved ones makes all the difference. At my worst, I was struggling to do much, such as household chores. Family in particular made all the difference.
At the same time, and I don’t understand this, I lost friends. Whether people don’t know what to say, or it is a primeval fear of disease, at the first mention of cancer some people just didn’t want any more to do with me. This is a time when you find out who you can rely on.
Regards
Rabbit
Hi Peterb16,
The world of myeloma has a lot of abbreviations. It can be difficult for any layperson to follow.
DVD (and other chemotherapy)
There are a lot of drugs which attack, destroy and/or prevent the growth of myeloma (= bone marrow cancer) cells. Through clinical trials, it has been found that combining different types of chemotherapy drugs is generally most effective.
As each of these drugs has a long name, and a treatment might combine 3 or 4 of them, abbreviations are often used. Also, a drug might be known by both a brand name and by a clinical name. For example, Velcade (the brand name) is bortezomib (clinical name).
DVD is Daratumumab, bortezomib (=Velcade) and dexamethasone. The first two are given by injection, dexamethasone by swallowing tablets.
After diagnosis, the first part of the treatment is generally something like DVD. There will often be other medications to take alongside the chemotherapy: for examlple, I had vitamin D tablets as my vitamin D level were rock bottom when I was diagnosed.
After a few months of DVD or something similar, the patient will often (not always) have an SCT.
SCT
This stands for stem cell transplant. Stem cells are taken from someone (nowadays most often from the patient – this is an autologous stem cell transplant = ASCT, but stem cells can be donated from someone else, most often a relative who matches).
To get the stem cells, drugs are given to stimulate their production and to get them into the blood: they can be collected from there in a process called aphoresis (known informally as stem cell harvesting). This involves lying in bed for a few hours while blood circulates through a machine which extracts the stem cells.
Just before the SCT itself, the patient is given a megadose of chemotherapy. This destroys almost all the cancer cells, but destroys the immune system too. Then the stem cells previously extracted are put into the patient to rebuild the immune system from nothing. Initially, the patient is highly vulnerable to infection, and is kept in isolation for that reason. The recovery process is slow and not everyone can go through an SCT (note: I am not speaking from experience on SCTs as I have a heart problem which indicates that I shouldn’t have one – at least until/unless there is no alternative).
After the SCT, the chemotherapy is typically restarted. This is often on a maintenance basis (i.e. to delay the return of the myeloma for as long as possible).
Regards
Rabbit
Hi Emma,
1. When I was more or less diagnosed (my consultant gave me meaningful looks and handed me a book from Myeloma UK, but the test results were not ready then), I didn’t know what on earth to tell my family. So I told them that it could be MGUS or MM, although I personally expected it to be MM. When that was confirmed, I told them all as much.
All my kids are in their twenties, but I was concerned most about the impact on the youngest, especially as he was at university. It was tough on all the family, but we got through it (and the youngest graduated successfully).
You know how your son will handle the news far better than I of course could, but I specifically recommend telling the school. They can keep an eye on him and take account of the situation with regard to A1 exams (not sure if they are still a thing 😀).
2. I hate being the bearer of bad news, but my experience (everyone is different) is that many of the items that you mention could be difficult for now.
Being immunocompromised can be challenging. Part of that challenge is being around lots of other people and their infections. Outdoor venues are good (especially with winter a long way off), meals out are good (keeping an eye on hygiene standards). Indoors, quieter venues (such as a half empty cinema) and/or wearing a mask is doable.
Breaks: short breaks in the UK sound good. A beach holiday would combine a change of scene (probably) and the chance to rest a lot.
It could also be a good time to plan ahead for when the treatment is over. There is nothing like things to look forward to when the going is tough!
Regards
Rabbit
Hi Blobgob,
I am only in my fifties: that is the key financial reason for the “semi” in my semi-retirement.
Like you, I worked from home during Covid. I still am working from home! Although a lot of employers are trying to get staff back into offices, mine is relatively laid back about this. Besides, commuting would bring unnecessary infection risks (from crowded trains) and my fatigue would make it exhausting.
For myself, I generally have a quiet life of reading, music, exercise and spending time in nature, but I am fitting in as many holidays as possible!
Rabbit
Hi,
You mention a few things. I can respond based on my own experience, point of view and plans, as a layperson with MM.
“At the min the transplant is planned for May/June and we provisionally booked to go away in March 2025. Do you think from your experiences this is possible…” It should be doable. 9 or 10 months is far more than the typical time that people take to recover from a stem cell transplant. The rule of thumb that I have seen is 100 days.
“… and if so do you wear masks etc on flights ?” Personally, I don’t. I have flown – short haul – on 4 return trips since I went into remission. One thing which I learnt from reading up on Covid travel restrictions during lockdowns was that the air on flights is filtered (using HEPA filters), so infections during flights were relatively rare.
“Have been quite reclusive at the minute to try and get through treatment as quickly as possible with no infections etc. the thought of rejoining society can be quite daunting” I went through this myself. Before going into remission last July, I stayed pretty close to home (in South East England). I built up my self confidence by first flying to Scotland (a relative was performing at the Edinburgh Fringe so I travelled around Scotland and saw him on stage), knowing that I could still access the NHS. My second trip was to Denmark/Sweden (which has some of the best healthcare in the world). Yes, my carbon footprint has been pretty big lately!
In terms of infections, one danger is with food and drinks. I suggest caution with the hygiene standards of restaurants, cafes etc. I have been advised not to have ice in drinks, not to have cold salads, to be cautious or to avoid raw meat and fish (e.g. sushi). This was all from a dietitian, to avoid bacterial infections.
Hi All,
To update: I am about to go part time. Despite being in remission, I am too fatigued to continue on a full time basis. Besides, I was planning to semi-retire in a year or two anyway.
This way, I can go on all the holidays that I want (my kids don’t mind me spending their inheritance), especially as my employer has been very supportive.
Hi Emmasue123,
I am now in remission after 1st line treatment, but from the start of treatment I was told that it was possible to skip one my weekly sessions in order to travel.
I would just say – to manage expectations – that chemo often causes fatigue. It may be best to plan anticipating this.
In the end, during treatment I only did a couple of long weekend breaks, partly due to fatigue. That gradually reduced after I went onto maintenance. I am now doing more active travelling (having come to a special deal with my employer on having a lot of annual leave this year to make the most of remission).
Regards
Rabbit
Hi Zozo921,
On lack of appetite: there are high calorie sachets that he can be prescribed, in a few different flavours. Add water to the powder, shake it and get him to drink it.
I lost 15kg from when I was diagnosed. I ate whatever I could to turn that around (biscuits, chocolate etc). Some months into remission, my body has decided that it wants to put weight on: one day last week, I had two lunches and wanted to have a third.
A diagnosis of myeloma can affect people in many different ways. I went through what I call the trauma stage and am now pretty calm in the context of being ‘high risk’ (like your dad).
Personally, I will be damned if I give up the rest of my days to misery due to this disgusting disease!
Is your dad someone who generally doesn’t open up about feelings? Would it help if he talks to Macmillan? For that matter, do you think he would open up if he talks to me?
Regards
Rabbit
